Sons bloods out of control for 12 months and no answers

[Nickybee]

Hi Everyone
My son (13yrs) was diagnosed two and half years ago with type 1 diabetes; his first 12 months he had really good control but once he started senior school things started to change his bloods was gradually rising and this was at first put down to the honeymoon period being over; then it was down to the stress of a new school (Jack has dyslexia and dyspraxia). We secured additional support at school but things have just got out of control in the last 12 months. His bloods are in the 20’s for 80% of the time and on many occasions have gone well into the 30’s with his meter unable to actually get a reading – in between this he can still drop and go into Hypo’s with no real warnings. For months now we have been on 2 hour checks 24 hrs a day for at least 60% of the time where he is continually having to take correctives; a couple of weeks ago he had taken around 300units a day over a weekend and was still maintaining bloods in the 20’s. We have seen the dietician and she has confirmed it is not food related as he would be counteracting any secret eating with the 2 hourly blood checks and we know he is not eating as he has no access to money and is at home most of the time as school can not keep him in when he gets bad (currently on less than 60% attendance). He has been in hospital a few times over the last month once with Hypos as he had a stomach bug and we could not get his bloods to rise after 2 pints of fruit juice, coke and 2 gels and the other times due to his high bloods but once he is in hospital he settles down and they fire him out the door. This last time he was kept in for 5 nights and the first few days his bloods started to come down to his target range (nothing to do in hospital so he just stays in bed watching DVD’s) but the last 2 days his bloods started to rise with no obvious reason they went into the teens between 11 – 17. I did some calculations for the doctor that showed the 2 days before he went to hospital he would have had to have 483 additional carbs in relation to the amount of correctives he had and was still maintaining an average of 20.5 bloods trying to prove that it is not food related (he is not over weight and has also lost a few lbs). His ketones are also up and down at there worst was 3.1 and 2 hrs after this reading his bloods went up but his ketones went down to 0.8. Nothing is making any sense and I can not find anything that remotely sounds the same his doctor is as confused and not really pushing anything as he is convinced it must be food related even though the dietician has told him it is not and I have shown him how much he would have to be eating) we are currently waiting for another consultant to look at his file but this is going to be at least a month. Can anyone shed any light on this it is destroying my son in both his health and education and I just don’t know what to do anymore. Thanks

 

[ciaramoh]

I got diagnosed with diabetes when I was 4 and I'm 18 now and the worst time for my control was when I was around 13 mainly based on hormones so you have to take that into account.
Is he on injections or a pump?


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[Nickybee]

I got diagnosed with diabetes when I was 4 and I'm 18 now and the worst time for my control was when I was around 13 mainly based on hormones so you have to take that into account.
Is he on injections or a pump?


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He is on injections and when it is bad he is taking injections every 2 hours day and night; it just seems to be a constant battle to keep his ketones down and he is on 1-5 carb ratio with 35 lantus. How long was your bloods out of control for?

 

[ciaramoh]

I think from when I was 13-15 it was bad but even now not completely settled. It can be hard to predict what is going to happen and I found that a struggle. I was put on a pump 7 years ago but you need to learn the basics from injections.
If you want to private message me your email I can send you some information I've picked up along the way. I run sessions at my local centre mainly for teens on pumps but I also know the background information so there might be something I could help with?


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[Paul McKenna]

I had that, apparently related to hormones, but know it will get better. At my early teen years my average blood sugar was 14ish. Just keep cracking on

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[hanadr]

Hi Everyone
My son (13yrs) was diagnosed two and half years ago with type 1 diabetes; his first 12 months he had really good control but once he started senior school things started to change his bloods was gradually rising and this was at first put down to the honeymoon period being over; then it was down to the stress of a new school (Jack has dyslexia and dyspraxia). We secured additional support at school but things have just got out of control in the last 12 months. His bloods are in the 20’s for 80% of the time and on many occasions have gone well into the 30’s with his meter unable to actually get a reading – in between this he can still drop and go into Hypo’s with no real warnings. For months now we have been on 2 hour checks 24 hrs a day for at least 60% of the time where he is continually having to take correctives; a couple of weeks ago he had taken around 300units a day over a weekend and was still maintaining bloods in the 20’s. We have seen the dietician and she has confirmed it is not food related as he would be counteracting any secret eating with the 2 hourly blood checks and we know he is not eating as he has no access to money and is at home most of the time as school can not keep him in when he gets bad (currently on less than 60% attendance). He has been in hospital a few times over the last month once with Hypos as he had a stomach bug and we could not get his bloods to rise after 2 pints of fruit juice, coke and 2 gels and the other times due to his high bloods but once he is in hospital he settles down and they fire him out the door. This last time he was kept in for 5 nights and the first few days his bloods started to come down to his target range (nothing to do in hospital so he just stays in bed watching DVD’s) but the last 2 days his bloods started to rise with no obvious reason they went into the teens between 11 – 17. I did some calculations for the doctor that showed the 2 days before he went to hospital he would have had to have 483 additional carbs in relation to the amount of correctives he had and was still maintaining an average of 20.5 bloods trying to prove that it is not food related (he is not over weight and has also lost a few lbs). His ketones are also up and down at there worst was 3.1 and 2 hrs after this reading his bloods went up but his ketones went down to 0.8. Nothing is making any sense and I can not find anything that remotely sounds the same his doctor is as confused and not really pushing anything as he is convinced it must be food related even though the dietician has told him it is not and I have shown him how much he would have to be eating) we are currently waiting for another consultant to look at his file but this is going to be at least a month. Can anyone shed any light on this it is destroying my son in both his health and education and I just don’t know what to do anymore. Thanks

 

[simon.davies2]

Hi nickybee

If your son is on a 1:5 ratio , would it be worth having a go at altering them gradually ? . I've just started on the pump and all I have done over the past week us sorting out my ratios . Hope your sons BG sorts its self out soon


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[AdamAdam]

Hi NickyBee,

I strongly suggest you read Dr Bernstein Diabetes Solution available at amazon he will answer all the questions and confusions you may have. Furthermore your son needs to try a lower or preferably a low carb diet (the lower the better).

Regards

 

[donnellysdogs]

Nickybee
I was told that if you are above 12 with your blood readings then any correcting doses should be doubled....(I don't know why this is, but it has worked for me on the odd occasion when things going wrong. This is just a starting point to consider to get levels lower when they are out of control.

You should if doubling correction levels wait 5 hours before doing another correction, so all the old qa insulin should be used, and you can keep an eye on by doing 1hrly checks.

If high, try to keep to minimal carbs. Sugar free jelly or ham and salad or meat with some veg. Loading with carbs above 80g in a day if going through high levels will push up levels higher. If over 12 your son should not be doing exercise or PE lessons or swimming etc, as exercise when above 12 can toss levels up even higher.

If levels are above 12 before the basal insulin is given and have been high the day before then you should also consider upping the basal by a significant proportion. I.e if levels been running in the 15's for 2 days and not dropping below 8, then I would for my basal injection be giving a quarter to double extra of the basal rate for one injection.... And then checking hourly or max two hourly. It is easier to have a little snack than to keep trying to bolus or correct your way out of constant high levels...




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[donnellysdogs]

My hospital will not consider anybody for a pump if they have high levels constantly or known dka's because on a pump if something goes wrong there is no background insulin working and highs and dka's could be worse...


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[Dillinger]

Hi,

This sounds very distressing for you; I'm sorry you are having such a rough time.

What short acting insulin is your son on? This is a long shot but some people develop an allergic reaction to zinc certain types of insulin which means they have to increase their doses by a large amount. Apidra is a short acting insulin without a zinc suspension which may be worth trying.

If it is not something chronic like that it sounds like you need to revise the insulin/carb ratio and have a look at the basal dose.

My insulin/carb ratio changes over the day; so it may be that you need to think about that. I am much less sensitive to insulin in the morning than I am in the evening (so I need more insulin for breakfast compared to supper).

Lantus is a pretty **** long acting insulin in my opinion; many people seem to have problems with it and it is also by no means a 24 hour insulin (although that is what is claimed) perhaps you could ask to change to Levemir which you can split the doses on (i.e. have half in the morning and half in the evening).

Are you able to do any fasting tests on your son? I.e. have a no carb meal and see what his bloods are doing? If he eats bacon and eggs you could just swap that for his normal meal and not give bolus insulin and see what the bloods do; this won't be as good as fasting as there will be some elevation of blood sugar but it will help you to see whether it is the background insulin at fault or whether it is the short acting insulin.

As has been said above cutting back on carbs is the best way of sorting out blood sugar levels; as all carbs become glucose in the blood.

Here is an interesting blog by a mother with a Type 1 son and her view on how to deal with it.

http://diabeticalien.blogspot.co.uk/

I hope you can get to the bottom of things quickly.

Best

Dillinger

 

[Paul McKenna]

Is your son on an insulin pump? It sounds like a sliding scale in hospital helps, and a pump is similar

Cheers, Paul.

 

[Nickybee]

Thanks everyone - jack is on nova rapid as his fasting acting insulin but sometimes it works as he can go from 13.4 at lunch time to 3.1 in 2 hours as he did today but then other times he can take his insulin for a corrective and jump even higher. I did get a call today from his consultant and it seems they have not done his blood checks that he should have yearly so we are going back on Thursday, I presume these are the checks for the thyroid and celiac diseases. We are going to try a very low carb diet which is going to be difficult as he is a fussy eater and I am also concerned that he has lost so much weight this last year I don't want him to lose anymore but if helps to at least see what his insulin is doing it will be worth it. Thank you for all your comments these really help it is so hard sometimes trying to explain to family and friends as they just don't understand the long term affects or the worry but saying that I don't think his medical team are much better x


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[donnellysdogs]

Annual checks are normally just hba1c and urine analysis, possibly full blood counts. Unless your hospital have concerns for thyroid or coeliac I dont think they would do these tests.

Are you seeing any patterns ie high every lunch time? Or high after sport. If your son is regularly dropping from 13 to 3 say in afernoons then your bolus and correction ratios are too high for lunchtime meals and corrections....
If your son when going higher after a correction, this may be at a specific time of day say mornings when this goes higher, so it would be your morning food and correction ratio's that would be too low for the mornings.

Insulin requirements and ratios may well be different for each meal he has. He may well be 1 to 8 in mornings, 1 to 10 at lunch and 1 to 9 for evening meals.
Are you altering any of the bolus ratios for different meal times?

Certain low carb foods can still put on pounds if you worried about weight loss... Because their fats are higher. I would be considering a complan milkshake mixture for him if he will drink them, as that will ensure he gets all vitamins.. However they aren't low carb.


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[Red shaw]

I think you need to get you son's insulin changed. I became immune to Humulin I and it bacame about as useful as water. Also check the areas he is injecting, he may have scar tissue in "favourite" sites and not be absorbing. Also you need to be constantly with the DSN until this sorted.
I don't know your son and wouldn't want to accuse him of anything, but are you certain he is doing his injections?
The clinic need to get to the bottom of this and get him sorted.
Just a thought, he isn't being prescribed steroids for any other illness, is he?

 

[darceeday]

Hi Everyone
My son (13yrs) was diagnosed two and half years ago with type 1 diabetes; his first 12 months he had really good control but once he started senior school things started to change his bloods was gradually rising and this was at first put down to the honeymoon period being over; then it was down to the stress of a new school (Jack has dyslexia and dyspraxia). We secured additional support at school but things have just got out of control in the last 12 months. His bloods are in the 20’s for 80% of the time and on many occasions have gone well into the 30’s with his meter unable to actually get a reading – in between this he can still drop and go into Hypo’s with no real warnings. For months now we have been on 2 hour checks 24 hrs a day for at least 60% of the time where he is continually having to take correctives; a couple of weeks ago he had taken around 300units a day over a weekend and was still maintaining bloods in the 20’s. We have seen the dietician and she has confirmed it is not food related as he would be counteracting any secret eating with the 2 hourly blood checks and we know he is not eating as he has no access to money and is at home most of the time as school can not keep him in when he gets bad (currently on less than 60% attendance). He has been in hospital a few times over the last month once with Hypos as he had a stomach bug and we could not get his bloods to rise after 2 pints of fruit juice, coke and 2 gels and the other times due to his high bloods but once he is in hospital he settles down and they fire him out the door. This last time he was kept in for 5 nights and the first few days his bloods started to come down to his target range (nothing to do in hospital so he just stays in bed watching DVD’s) but the last 2 days his bloods started to rise with no obvious reason they went into the teens between 11 – 17. I did some calculations for the doctor that showed the 2 days before he went to hospital he would have had to have 483 additional carbs in relation to the amount of correctives he had and was still maintaining an average of 20.5 bloods trying to prove that it is not food related (he is not over weight and has also lost a few lbs). His ketones are also up and down at there worst was 3.1 and 2 hrs after this reading his bloods went up but his ketones went down to 0.8. Nothing is making any sense and I can not find anything that remotely sounds the same his doctor is as confused and not really pushing anything as he is convinced it must be food related even though the dietician has told him it is not and I have shown him how much he would have to be eating) we are currently waiting for another consultant to look at his file but this is going to be at least a month. Can anyone shed any light on this it is destroying my son in both his health and education and I just don’t know what to do anymore. Thanks

I just want to say hi from one stressed mother of a teenage to another, we too are having problems with my 14 year old daughter but in her case it is unexplained night time hypos, we are up most of the night having to do her BG as she just drops with no warning, they cant offer any answers and just keep passing us around consultants. she is on the waiting list for a pump to see if that helps. sorry I cant be any help with your son just wanted you to know your not the only one trying to help your child through the teenage diabetes rollercoster as I know somtimes it feels like you are.
Good luck

 

[donnellysdogs]

Can the hospital not provide you with a cgm for a week? This would at least give guidance to what adjustments your daughter needs with her insulin and foods


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[darceeday]

They have just done this and they dont know where to go, cause some days she needs very very little insulin and on other days she needs what they would consider normal for her age hight and weight ( not overweight) there does not seem to be a happy medium. the other problem we had she went on a school trip before we knew about these hypos over night and she ended up in a coma and did not require any insulin for 36 hours!! but they cant tell us why as they did not do an insulin/ cpap test until after they had started her back on insulin! I have 1 consultant thinking there is a problem with absorption, another that thinks she takes too much ( i know she wouldnt do that) she has even got me to start doing her injections again to prove to them she is not, and another that just keeps saying I have never seen this before. So I just feel I am going round and round in circles and getting no further on.

 

[jeb]

Just wondering as I have been a diabetic for seemingly centuries!! why an alternative insulin which is animal based has not been tried by the specialist. I know they (the specialists) are in the pockets of the pharma companies. but the only thing that I was able to keep balanced sugars on was a quick acting Hypurin Regular. Lantus is OK as a basal insulin but actrapid is frankly rubbish and doesn't suit everyone. They say that animal insulin is far better for young diabetics and certainly now I have had the disease for 58 years I am still on it. Wockardt is the supplier (CP pharmaceuticals in Wales) talk to you GP about it.

 

[darceeday]

Just wondering as I have been a diabetic for seemingly centuries!! why an alternative insulin which is animal based has not been tried by the specialist. I know they (the specialists) are in the pockets of the pharma companies. but the only thing that I was able to keep balanced sugars on was a quick acting Hypurin Regular. Lantus is OK as a basal insulin but actrapid is frankly rubbish and doesn't suit everyone. They say that animal insulin is far better for young diabetics and certainly now I have had the disease for 58 years I am still on it. Wockardt is the supplier (CP pharmaceuticals in Wales) talk to you GP about it.

That might be an idea for nickybee, as her son was only dignosed 2 and a half years ago there is a good chance he has never had an animal based insulin, I asked about it last week as my daughter was on an animal based insulin 9 years ago when she was first dignosed and most of her problems started when they took her off it about 3 years ago. I got a roll of the eyes when I suggested it, but nickeybee might have better luck.